Patient-reported outcomes, such as shortness of breath and chronic cough, are key metrics in understanding how interstitial lung disease affects people’s lives. Armed with this new perspective, we have come to understand the very substantial physical and psychological benefits of pulmonary rehabilitation for individuals living with moderate to advanced interstitial lung disease (ILD) of all types. Dr. Noah Greenspan has been a visionary leader in pushing the envelope regarding what is possible to achieve through pulmonary rehabilitation and other lifestyle changes in the setting of ILD; an original thinker who is not afraid to challenge conventional wisdom. 

In this book, he takes a holistic view of how ILD affects people’s lives and psyche. In addition to approaching the subject from the patient’s perspective, he takes the unique approach of having patients write many of the chapters in the book. This methodology provides a very fresh and personal vantage point from which to understand and benefit from the first-hand experiences of patients and caregivers, adding further impact to the wealth of practical information contained in this valuable guide to living with ILD.

Respectfully submitted,

Robert J. Kaner, MD

Associate Professor of Clinical and Genetic Medicine

Weill Cornell Medicine

Division of Pulmonary and Critical Care Medicine and Department of Genetic Medicine

Facilitator’s Note by Charlene Marshall, BaSc, MA

The original vision for this book began in late 2019 and feels surreal to finally be holding it in our hands! We, as a group of committed IPF/ILD patients and clinicians, wanted to create a resource that is as unique as your journey with lung disease. As described by Dr. Noah Greenspan, this book is a majestic tapestry; weaving together our personal experiences with IPF/ILD and all the “what-we-wish-we-had-knowns” and “would have-should have-could haves” since our own diagnosis, along with a compilation of information pertinent to the clinical treatment of interstitial lung disease.

As the facilitator for this collective project, I truly believe it is one of the most meaningful projects I will ever work on. The authors of this book literally span the globe and I couldn’t be prouder of our efforts to come together, virtually, and regularly to move this project forward. Thinking about what to include in this book took a lot of self-reflection about our own IPF/ILD journey which stirred up emotion. We were vulnerable; sharing our stories with each other and the world but doing so aligned with our vision: making your journey with IPF/ILD easier.

We began this project as a patient group of ten and are finishing it as a group of seven; Don Prager, Tom Hoks and Ann Kelley, we miss you and are grateful for the contributions you made to this book during very difficult times in your lives. With each loss came a shift in personal and group dynamics and the continued decision to keep going after the death of our friends, was like climbing a steep hill, requiring us to keep climbing and pushing ourselves and each other physically and emotionally.

In addition to experiencing loss, our patient group had to contend with many of our own personal issues including social isolation, illness, hospitalizations, transplantation listing, palliative care, and a global Covid pandemic. These adversities caused various bumps in the road throughout the course of our writing process, as did navigating a plethora of different perspectives, personalities, and time zones. Through it all though, the desire to help the IPF/ILD community remained our laser focus and we succeeded in achieving that goal.

To the patient-authors and Dr. Noah Greenspan, who worked tirelessly on this project, you have all inspired me with your colossal efforts, and for that, I will always be grateful to you. Thank you for letting me facilitate this project.

With love,

Charlene Marshall